Health Organization for Pudendal Education

hi
could anyone give my their experiences at 6 weeks post tg decompression surgery, i was starting to have a lessening of pain but it seems to have come back with a vengence, i know its not an easy recovering but has anyone else had this, i really cant think of anything i have done that has caused this to happen

andrea

It's not uncommon for this to happen. Some of it can be due to the nerve starting to waken up and regenerate. Some of it can be due to all the anesthesia/drugs we get during surgery takes awhile to totally be eliminated from our systems and as the drugs slowly leave we can have increase in pain. It can take a couple of months but for the majority of us it settles down back to baseline and then you will start to notice improvement. It is a very slow process to recovery and can take several years before you will know the full extent of recovery. Be patient with yourself, don't get discouraged, and don't over due.

thanks for that i guess i just need support at the moment as the constant burning vaginal and vulval pain is really depressing, i am trying to ignore it and continue with my life but it is really difficult at the moment. i cant tolerate most pain killing meds which makes things worse and ice doesnt really do anything either, sometimes warm baths help



andrea

Andrea, I had a lot of increased burning after surgery that eventually faded away. One thing that helped me get through the worst of it was to alternate sitting in a shallow tub of very warm water and a shallow tub of cold ice water. The tubs were up on crates in my bathtub.

The crates were like: this http://www.walmart.com/ip/Sterilite-Fil ... 6/14138976 http://tinyurl.com/nmju4lh
The shallow tubs were like this: http://www.walmart.com/browse/storage-o ... 828_163961 http://tinyurl.com/nlcbjzx

The alternating hot/cold was invigorating and brought fresh blood to the area -- maybe why I recovered so well?

I used a kid inflatable swim ring to sit on.

Violet

hi violet
i will give it a go, i do find that sometimes hot baths help, is there anything else i can take or do


andrea

I noticed in your other posts that you don't do very well with some of the common drugs. Maybe some narcotics to get you through the first year? I took oxycodone the first 9 months post-op -- but only in the afternoon/evening.

Violet

HI
sorry i havent replied to your last post but my mum passed away and i have been busy having to sort everything out.
i am now 9 weeks post surgery, and still not seeing any improvement, maybe some days is seems a little worse, i still cant sit and have tried many cushions, including i have just bough the sweet cheeks cushion tried it yesterday but today i have a severe flare.
the dr put me on oramorph to try but it didnt relieve any pain just made me feel drugged and depressed, so i guess i just have to sit it out.
i suppose 9 weeks is still early days as everyone keeps telling me but i also now seem to be getting achey pain in my butt where my legs meet my butt at the back, i am just hoping my surgery hasnt made things worse and to top it all i am really concerned that i will have to stay standing at my mums funeral, everyone that doesnt know me will be looking at me wondering what i am doing.
and i am still having constant burning in the vaginal and vulval area, is this normal
please anyone out there that has had the surgery i really need some encouragement!


andrea

Andrea,
My heart goes out to you and your family on the loss of your Mum. I am so sorry you have this so soon after surgery. My only advice is to please try and block out "what other people think" because if they knew not only would they not mind but be in awe that you are attending the funeral. You have plenty to deal with already. At 9 months I am not sure I was sitting much but by 3 months finally crafted a cushion and could sit some but remember we are all different and your journey may be slower. My brother passed over a year after sugery and by the end of the week's planning and services I was severely flared and everybody sufferred with me. You are very strong and will get through and survive as I eventually recovered. Take care and hang in there we are thinking about you and wish you well.
Janet

Andrea, I'm sorry about your mum's passing. At 9 weeks post-op I was not sitting -- in fact I laid down at my nephew's wedding 9 months post-op and regularly laid down at church too. I really couldn't count on being able to sit much until 18 months post-op. Sorry...I know that seems like forever. Take care of yourself during this difficult time and try to delegate as much as you can.

Hugs,

Violet

hi andrea, im so sorry i havent replied to your request but i havent looked at the forum in a while. i had decompression surgery in france in june 2012. i had bilateral surgery & was advised that both my pudendal nerves were compressed. Truthfully i didnt really start to see an improvement until month 9. i did however put on a brave face & through gritted teeth went back to work 3 months post surgery. The changes are so subtle that i measure it on activities that i can do, that i previously couldn't. i take things easy and have started to say no to things when i feel tired. from despair to hope & yes there is lots of hope. i expect more improvements in the coming years . i have reduced my lyrica to 75 mgs twice daily & thats all i take. i try to walk a lot and although i can & do sit down i dont sit for long periods (other than when driving). i have a kneeling chair at work but strangely can drive for hours without much discomfort. i gather from talking to others with this injury that you should measures progress in years rather than weeks. hope this helps & good luck x
caty